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Walking impairment is one of the most common and disruptive consequences that people with MS face but also one of the least discussed between patients and their doctors. During this interview, brought to you by MoveOverMS.org, a website sponsored by Acorda Therapeutics, MS experts will explain what they mean by "mobility impairment" and explore what causes it. You'll learn about physical problems such as weakness and balance trouble as well as other limitations like fatigue and depression. Experts will explain the importance of discussing concerns about walking impairment with your doctors early and often, and you'll learn about simple strategies you can incorporate in your daily life that may help you make the most of your existing mobility. Plus, real MS patients will share their stories, strategies and experiences.

What Is Mobility Impairment and How Common Is It?

Dr. Kraft:

Those of us managing patients with MS realize that getting from point A to point B, it truly is what mobility is. And we also realize that patients may very conveniently and safely walk short distances, but the typical MS patient might need something like an electric scooter to go long distances or to be out all day in the mall. And I believe that patients with MS should consider that there isn't just one right way to ambulate or get them from point A to B. There may need to be several different strategies they use based upon what their needs are, how long, how they feel, and so forth.

It is not only one of the most common challenges. It is one of the most disabling for persons in their day to day activities. I would say about two thirds of the patients have difficulty walking to some degree and maybe more if you really query them carefully. Walking impairs daily life. Many patients with MS, because of fatigue, can do fairly well in short distances but have problems over longer distances.

How MS Contributes to Mobility Impairment

Dr. Kraft:

One of the facts of life about MS is that it does cause damage both in the spinal cord often, not always but frequently in the spinal cord, and also in the brain. And remember that when you walk the impulse starts in the brain cortex, and it has to go down clear to your feet, and that has to go through the brain, the brain stem, into the spinal cord, through the spinal cord and out the peripheral nerves. So the likelihood of having a problem somewhere along that path is greater than having a problem along a shorter path.

So we assess that and try to determine how we can substitute for it.

Patients may have some numbness on the skin, but something that many patients may not be aware of is there are nerves from the joints in the feet and ankles that tell the brain where the foot is in space. It's not uncommon for a patient who looks strong and seems strong on testing to have falls. And when you test for this position, sense it may be deficient to let patients know where their feet are. And a good clinical observation on this is a patient who maybe cannot walk in the dark or stumbles at night but during the daytime when they can see, they can walk very well.

Evaluating Mobility Impairment

Dr. Kraft:

We evaluate patients with mobility [impairment] by clinical evaluation. We do the 25 foot walking test. It's a test to see how long it takes to go 25 feet. [Editor's note: There are additional tests utilized to assess mobility that Dr. Kraft covers later in this presentation.] By looking at how fast or how slow patients are we can tell how well they are doing or how badly they are doing. We also will do a physical examination which will involve checking especially the lower limbs, looking for any tightness or contractures, looking for weakness, looking for spasticity, which is that jumpiness of muscles. We will test patients for something we call clonus, which is the bouncing of the ankle when the ankle is moved. And we, of course, need to pay attention to the sensory deficit.

We would look at something called the TUG, the timed up and go test. And this is a test where there are two chairs a certain distance apart, and the patient is sitting in one. And when the timer goes off, the patient stands up, walks over to the other chair and sits down, then gets up and comes back and sits down in the first chair. So this times the speed of walking and times how fast they can get up and turn.

And then we can go with one step higher. We can do the timed up and go with cognitive challenges, doing mathematics in their head. We can just build upon this, and then we are able to really tease this apart and find out where the problem is and try to correct that.

How Mobility Impairment Affects Quality of Life

Mr. Sutliff:

It really impacts not just their quality of life but the entire family. I often talk about MS as being a disease that affects the entire family. And so when patients come to me, they will say they have to adjust their schedules and try and work in rest times in order to combat the effects of the fatigue.

And in terms of their work ability, it can have a distinct effect on that. Sometimes they require adaptations at work in order to make their work less difficult, for example, parking closer to their job so they can get in without the effects of fatigue when they walk in. In some cases, it can result in a loss of work, so it can have a significant impact on their finances.

This disease affects the spouse, the significant other. It affects their children. It affects even their parents. What we do is we try and incorporate some assistance in certain things from different family members, so it's quite a significant effect on the family life.

Discussing Mobility Concerns with Your Doctor

Elizabeth:

First, it's very important to see your doctor regularly even when you aren't experiencing many symptoms. I recommend keeping a diary of your symptoms and your activities and talk to your doctor about how things have been going since your last visit. You and your doctor might be able to see some patterns emerge that will help you manage your disease. You can also ask your physician about an exercise plan that will be best for you. Check out what resources are available in your community. There may be exercise programs that are specifically designed for people with MS. Water aerobics are very helpful for patients with MS, and it's also helpful for the patients with MS who are having trouble with their balance because it can protect them from injury. And you might want to look into a seated yoga class or a seated strength training class.

Preserving and Maintaining Mobility

Dr. Kraft:

Every patient with MS should see a physical therapist and have a physical therapist to work with. The ability to maintain walking function is not just strength or absence of jumpiness or spasticity of muscles or absence of problems with the sensory input or fatigue. The ability to function is also dependent upon the joints. And let me just take a moment to talk about this. It's very important.

If those of you listening in can just imagine standing up and standing with your knees at maybe a 10 to 15 degree flexion angle, how long could you stand like that? You couldn't listen to this whole program standing with your knee flexed for an hour, but that's what MS patients sometimes are forced to do because they have been so sick for so long and have joint tightness. We call these contractures. So they cannot get the knee straight. They cannot get the hips upright. They cannot get the center of gravity over the ankle. They are forced to stand in a very inefficient way, and with fatigue and weakness it's no wonder they can't even stand up for a few minutes, and let alone walk.

So being sure that the joint range is normal or close to normal and allowing the center of gravity to properly balance the patient is absolutely key. So stretching joints, strengthening muscles, and I should also say that we have shown that both in severe and mild MS patients, can go a long way to increase strength. It may not be a huge increase, but it usually has a very large functional benefit.

What to Expect from Physical Therapy

Mr. Sutliff:

Aerobic exercise has been shown to be very beneficial in the cardiovascular health obviously as well as in combating the effects of fatigue in MS. The key with it is exercising only to a moderate level of exertion. We don't want to over exercise. A "no pain, no gain" approach just does not apply when we are trying to work with patients with MS. I like to incorporate aquatic exercises into the routine, and that can often be done at very little to no cost because there are water exercise classes that are sponsored through the National MS Society. We [have] numerous programs available just in our area here and also around the country.

The water can be used in a variety of ways. If you have your arms out and if you picture being in the shallow end of a pool, perhaps you have weakness in your arm, you can move your arm slowly across your body and then slowly out away from your body, and the water can help assist the movement for arms that happen to be weak. But if we move the arms quickly against the water and press against the water, now the water can be used to resist the movement, and so it can be used for range of motion. It can be used for strengthening. I also will use it for balance-type exercises in the water as well as walking exercises in the water. And even the buoyancy of the water will help unload some joints. So if I have a patient who maybe has some knee pain or some back pain or hip pain, that buoyancy within the water will make their exercise much more comfortable than that same type of exercise may be on land.

For patients with balance deficits, we will do standing balance exercises or dynamic balance exercises where they are moving as they are doing their different balance tasks. Sometimes we will work with sitting balance. And, for example, someone with a weaker trunk and difficulty sitting upright, we may just sit on a flat surface. But as strength improves, we can challenge it by using therapy balls. So the patient sits on one of the large therapy balls, and we can challenge their balance and do different strengthening exercises for their arms and legs in that position.

I will also have them do some resistive strength training, again not to the point of overexerting. This is just a moderate level of exertion for any kind of strength exercise where I really try and teach to our patients that the first repetition, and the last repetition of any kind of strength exercise should have the same speed and quality. There shouldn't be a fatigue effect building in as they are doing their repetitions.

How Important Is Exercise?

Elizabeth:

I just think it's critical. And I have spent a lot of time working with people with MS throughout our state and in the country over the last 10 years, and just my anecdotal experience is that the folks who are out there being active and exercising just are doing that much better than the ones who aren't. And so for me it's something that is just part of my regular routine, and it makes me feel better. Like everybody else, my schedule gets hectic, and it gets busy, and occasionally you miss a few days. And it doesn't take long before the fatigue and the weakness creeps back in. So I just get back on my routine, and it's such an easy thing to do to fix your problems with energy and stamina.

It just helps your mental disposition. And when you feel like you have control over your energy level and your stamina, when you have a little setback with an exacerbation it makes it easier to deal with it. I am sure it makes it easier for my family to deal with me. So it's good for everybody that's involved.

What Research Is Being Done to Help People with Mobility Impairment?

Dr. Kraft:

I wanted to talk to you very briefly about a study we did some years ago on resistive exercise or strength building exercise in MS patients. I took two groups, one a very mild group of MS patients and one a very severe group of MS patients and studied them both with resistive, in other words weight lifting type of exercises to strengthen muscles, not the aerobic type. We studied them for three months. They came in the laboratory three days a week and came in for three months, and at the end we measured their strength. In both cases, it went up quite a bit, and the muscles strengthened. But amazingly we looked at functional activities. We looked at the time that it took them to climb stairs, and they were much faster, both of them with the exercise, after the exercise. We looked at their timed up and go. They were both faster. We looked at a number of other functions, and they functioned better. It wasn't that they were just stronger. They functioned better.

And then the amazing and I think the most important thing, we gave them a standard measure of self perception of health. It's called the Sickness Impact Scale, and it's where patients assess how healthy they think they are. And when they both came in, initially the mild group of MS patients felt that they were sick people, and the severe group felt they were really sick people. At the end of the study, the mild group scored just like normal people. They didn't see themselves as being sick. And the severe group scored themselves as the mild group did when they came in, just sort of mildly sick. So I think exercise, and this is just resistive and we know that aerobic exercise in addition would also be beneficial, this is just strengthening. Patients could function better, safer, faster, and they felt much better about themselves.

Getting the Most Out of Your Doctor Visit

Dr. Kraft:

I think that there are three points that are really important to get the most out of your medical visit. Realize that with the way the healthcare system has forced us to practice, you don't have hours and hours for each visit. So when you are going to your physician, think ahead of time what you want to talk about. And I have sort of put in place in our clinic three things we can really deal with if they are major things we deal with. Of course, we can deal with more if necessary.

So think of the top three priorities for any visit, and maybe as they get treated and corrected, then the next visit you will have some more things to work on. Think of what you want to prioritize because with regard to new medicines, with regard to new techniques and treatments and so forth, you may only have time and effort, ability to deal with three things at once. So pick the top three priorities.

Second point: Buy yourself a little, inexpensive tape or digital recorder. Take it into the doctor's office, put it on the desk, open it up, turn it on, so that when you and the doctor talk, rather than writing down what the doctor says, which is a form of multi-tasking, which means you probably won't hear exactly what the doctor is saying as you are writing down the other ideas, you can focus fully on what the doctor says. And when you go home, you can let your significant other hear this, you can listen to it, and I guarantee you will hear things you hadn't heard when you were there.

My third one is always ask to get a visit with a therapist, a PT.

More Information on Multiple Sclerosis and Mobility Impairment

If you'd like to know more about multiple sclerosis and mobility impairment, listen to the entire show and hear how our experts answered questions from the audience.

For more information on multiple sclerosis, check out these resources:

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